#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Parijat Deshpande, CTP, CCTSI @ParijatDesh
RT @ParijatDesh: Think you might have #PPD or #PPA but your doctor is dismissing you or not taking you seriously? Keep looking for a doctor…
Patient Chat @patientchat
Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat
Heather McCullen @H_SalemOaks
Hi #patientchat, Heather from outside of Ann Arbor Michigan. So far I'm only seeing tweets from @patientchat, I hope it isn't a twitter issue.
Patient Empowerment @power4patients
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with ot…
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat
Carly Flumer @carlyflumer
@patientchat Hi! I’m Carly, a #thyroidcancer survivor and future patient advocate! #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Kevin Freiert @K_SalemOaks
Kevin from Salem CT here. I don't think it 'tis twitter.
Vera Rulon FAHIMA @vrulon
#patientchat @vrulon here from NY. Looking forward to the chat!!
Patient Chat @patientchat
You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat
Amanda @LAlupusLady
RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical need…
Heather McCullen @H_SalemOaks
#patientchat
Kim Emson @kimemson
#patientchat already introduced myself on the wrong thread! i help patient advocacy through animation 👋
Patient Empowerment @power4patients
@H_SalemOaks @patientchat Hi Heather! Hope it's not a Twitter issue but fear it may be a "Friday in mid-summer issue" #patientchat
Patient Empowerment @power4patients
@vrulon Welcome! #patientchat
Mighty Casey Quinlan @MightyCasey
Greetings, all - loudmouthed #citizenscience #opendata firestarter here. Have a history as family caregiver/manager and #cancer patient. #patientchat
Patient Empowerment @power4patients
@carlyflumer @patientchat Hey Carly, glad you're here! Happy Friday :) #patientchat
Heather McCullen @H_SalemOaks
@power4patients @patientchat Entirely possible. It was a hard decisions to come in from outside #patientchat
Amanda @LAlupusLady
Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system. #patientchat https://t.co/C3xHoLi1gK
Patient Chat @patientchat
Today's #patientchat topic is Managing the Emotions of a Chronic Illness https://t.co/lCmrmWDInm https://t.co/uhrmO5CSL3
Carly Flumer @carlyflumer
@power4patients @patientchat Hello!! Excited for this topic! #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
Hi folks! I'm Christie, and I'm super excited to be participating in my first #patientchat. I am a public health professional focused on patient center interventions for self-advoacy!
Patient Chat @patientchat
I will introduce new Topics with T1, T2...Please include corresponding T# at the front of every answer - hard to remember but helpful! #patientchat
Christina Lizaso @btrfly12
Waving hello to #patientchat - can't stay, but if you are around the Twittersphere you should check it out. Today's topic is "Managing the Emotions of a Chronic Illness".
Our Odyssey @_OurOdyssey_
Hi everyone! Seth here as one of the co-founders of Our Odyssey, a new organization that connects young adults impacted by a rare or chronic condition to social and emotional support and to help empower them within their community. #patientchat
Alan Brewington @abrewi3010
Alan here. I’m a #rheum & #chronicpain storyteller, plus I’m hungry too. #patientchat
Virginia McIntyre @Virginia_McI
@patientchat Hi, Virginia from NS #chronicpain #patientchat
Christina Lizaso @btrfly12
@kimemson @patientchat very cool - visualization is an underused tool in healthcare! health literacy so enhanced with images! #patientchat
Patient Empowerment @power4patients
@abrewi3010 Hey Alan! #patientchat
Patient Chat @patientchat
T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF
Patient Empowerment @power4patients
@btrfly12 Hi Christina! Hope you're having a great summer #patientchat
Kim Emson @kimemson
couldn't have put it better myself! #patientChat
Alan Brewington @abrewi3010
@power4patients Hi, how are you? #patientchat
Patient Empowerment @power4patients
@LAlupusLady @patientchat Hi Amanda, happy you're here! #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A1: 8 years later and I’m still trying to figure this out! #PatientChat
Patient Empowerment @power4patients
@MightyCasey Helllooo! Great to have you here. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@carlyflumer @patientchat I had thyroid cancer too! #thyca #patientchat
writer sam @writersamr
Hi @patientchat, 3x cancer survivor here #patientchat
Inspire @teaminspire
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
Christina Lizaso @btrfly12
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
Kim Emson @kimemson
A1 there are so many awesome advocates blogging and vlogging and podcasting i'm sure a comfort to many and will continue to be. peer to peer leading the way #patientChat
Vera Rulon FAHIMA @vrulon
T1: Educate yourself. A good doctor that explains everything in layman's terms helps too. #patientchat
Patient Empowerment @power4patients
@abrewi3010 Doing well, thanks. Looking forward to the weekend. I'm landlocked in Colorado but dreaming of the beach. How are you? #patientchat
Mighty Casey Quinlan @MightyCasey
T1: I'm not chronic (altho there is validity in POV that cancer is a chronic condition, it could return at any time) but my breast cancer dx had me writing like a mad dog to process the experience. Turned into a book 🤣 #patientchat
DoubleTrojan @DoubleTrojan
@patientchat T1: Most with #cysticfibrosis are diagnosed as infants. However I find that giving back and advocating for the community can give a sense of purpose and empowerment. I’m currently battling @UCLAHealth ‘s dangerous practices that harm the health of CF patients. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat I’m Heather. Animal lover and huge fan of DAYS and 90 Day Fiancé. . Oh, and I have Cowden Syndrome and L’hermitte-duclos Disease. #pten #btsm #PatientChat
Carly Flumer @carlyflumer
@patientchat T1: Talking with family. Expressing emotions through journaling. Taking mental health days from work. Knowing I have a support system helps, too. And exercise, which can be therapy as well! The mental aspect of #chronichealth is half the battle. #patientchat
Inspire @teaminspire
Hello to #patientchat, John Novack here on behalf of Inspire.
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@MightyCasey Very cool! #patientchat
Speakbox @hi_speakbox
@patientchat Having been diagnosed with #PTSD, I can relate to the loss of control. It helped to have a care team who enabled me to play an active role in my care, providers who collaborated with me. ^Aidan #patientchat
Mighty Casey Quinlan @MightyCasey
RT @vrulon: T1: Educate yourself. A good doctor that explains everything in layman's terms helps too. #patientchat
Virginia McIntyre @Virginia_McI
@patientchat Peer support and self management classes have a valuable role as we learn to live with a chronic illness. #patientchat
Alan Brewington @abrewi3010
A1 this is why it’s important to live in the moment. My life changed drastically the nite I fell rock climbing. All that meant was my life path changed, change isn’t good or bad. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat A1: Find support and don't be afraid to seek professional help. #patientchat
Heather McCullen @H_SalemOaks
@vrulon How to you keep this from making it more scary? Knowing the facts can be empowering, but it can also be really overwhelming. #patientchat
Nick Dawson @nickdawson
@patientchat #patientchat one thing I’ve seen over and over is the loss of agency people experience at every step. We found that introducing even a small few choices helps people feel so much more empowered and in control.
Rheumatoid Patient @rheumpatient
Sorry, a bit late to chat. Have RA and fibro. Live in the UK. #patientchat
Vera Rulon FAHIMA @vrulon
@carlyflumer @patientchat Thank you for this. Wise words and great advice! #patientchat
CancerDotNet @CancerDotNet
T1: “Take the time to accept the news, process your thoughts and feelings, then slowly put yourself back together and prepare for undergoing treatment. @StanfordCancer's Dr. @l_schapira's compassionate advice for when cancer becomes too much: https://t.co/IQpZqUSOkL #patientchat
Radha @radhachitale
@patientchat Hello! Digital ed from Inspire here. #patientchat
DoubleTrojan @DoubleTrojan
@patientchat @UCLAHealth T1: By making sure I look out for those with #cysticfibrosis who are vulnerable, too sick to advocate or don’t have the knowledge, I know I am saving lives. #patientchat
CancerDotNet @CancerDotNet
@patientchat @power4patients T1: “Take the time to accept the news, process your thoughts and feelings, then slowly put yourself back together and prepare for undergoing treatment. @StanfordCancer's Dr. @l_schapira's compassionate advice for when cancer becomes too much: https://t.co/IQpZqUSOkL #patientchat
writer sam @writersamr
A1: I've definitely felt this! Not sure if I did take control, but when I wanted to research my illness and surgeries my partner did it for me so I still could take some control but was also protecting myself from the scariness of googling health stuff #patientchat
Patient Empowerment @power4patients
RT @cvhconsulting: @patientchat A1: Find support and don't be afraid to seek professional help. #patientchat
Rheumatoid Patient @rheumpatient
A1: I went for CBT which helped me gain some perspective i.e. focus on the things I still can do, rather than on what I can't. #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat
Patient Empowerment @power4patients
RT @abrewi3010: A1 this is why it’s important to live in the moment. My life changed drastically the nite I fell rock climbing. All that me…
Alan Brewington @abrewi3010
@power4patients Exhausted and frustrated. It’s time to head to the mountains for some fresh air and to do something “stupid” 😜 #patientchat
Patient Chat @patientchat
T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@hi_speakbox @patientchat Yes! Having a supportive provider who will listen to your needs and encourage you to play an active role is so vital, I'm glad you found that support. #patientchat
Mighty Casey Quinlan @MightyCasey
@ZHeatherChamp 10th anniversary 3rd edition will land in November this year. Stay tuned for updates - have to rewrite last chapter (hello, stupid health care politics tricks!), rigorously revise/re-science-check whole book. I walk my #science fact talk. #patientchat
Vera Rulon FAHIMA @vrulon
@H_SalemOaks Not sure I have a cogent answer for you. Perhaps knowing that there is something you can do is helpful -understanding of what you do, especially why you need to do it? #patientchat
Our Odyssey @_OurOdyssey_
@patientchat T1: We believe that finding the proper peer support is always helpful and will take away from that sense of isolation. #patientchat
Alan Brewington @abrewi3010
RT @nickdawson: @patientchat #patientchat one thing I’ve seen over and over is the loss of agency people experience at every step. We found…
Our Odyssey @_OurOdyssey_
RT @carlyflumer: @patientchat T1: Talking with family. Expressing emotions through journaling. Taking mental health days from work. Knowing…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A2: I have my blog, which helps a bit. And I take/edit photos on @Hipstamatic Which surprising helps me too! https://t.co/ivJDrv7peo #PatientChat
Vera Rulon FAHIMA @vrulon
@writersamr Oh my... I know I said about educating oneself but you're right about "googling health stuff". I know I personally always end up in the worst case scenario. #patientchat
Melissa VanHouten @melissarvh
I'm a control freak, & as such, loss of control has been 1 of most difficult things. In past, I've acted foolishly (like intentionally not eating) 2 "show" this illness who's in control, but, over time, I've learned 2 focus on attitude, which I can still control. #PatientChat
Kim Emson @kimemson
A2 there must be other great communities like this one specific to you condition that would be a great support or does misery love company #patientChat
Carly Flumer @carlyflumer
@patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUTABLE websites that’re based on cancer & specific types of cancer to become an #educatedpatient. @theNCI, @AmericanCancer, @MayoClinic are great! #patientchat
Vera Rulon FAHIMA @vrulon
A1: Speaking to family and friends. Speaking with people who are going through similar. I'm lucky to have a great doctor who is always available. Same with my cardiologist. #patientchat
Alan Brewington @abrewi3010
A2 my first physical therapist always told me I’ve earned the right to bad days. I combine that with @justagoodlife it’s just a bad day but not a bad life. #patientchat
Our Odyssey @_OurOdyssey_
RT @carlyflumer: @patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUT…
Mighty Casey Quinlan @MightyCasey
T2: this is tough answer for me this week. Having PTSD issues related to #MeToo ghosts raised by Epstein wall to wall headlines. Physical health = A OK (for an almost-70yo-geezer). Emotional? A little rocky this week. #patientchat
Alan Brewington @abrewi3010
@JamieRoger8, where are you? 😊 #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat A2: This is a tough one. Affirmations, talking to a friend or family member, doing something that makes you happy. Puppy cuddles (for me!) #patientchat https://t.co/LMKGmNWCfT
Speakbox @hi_speakbox
@patientchat T2: Negative emotions can pop up anywhere, not just in mental health. It would be pretty biased to suggest our evidence-based activity library. So instead, what helped me was time with friends, to just be and not talk about my illness. ^Aidan #patientchat
Carly Flumer @carlyflumer
@patientchat @teaminspire @theNCI @AmericanCancer @MayoClinic Also check out @_OurOdyssey_ when it develops into an awesome organization led by @Srotberg15 & @tunaturns. #gamechanger #patientchat
Rheumatoid Patient @rheumpatient
A2: I find singing or listening to music helps me (I've always been a musical person). Also mindfulness. #patientchat
Heather McCullen @H_SalemOaks
@abrewi3010 @JamieRoger8 Good question! #patientchat
DoubleTrojan @DoubleTrojan
@patientchat T2: turning negatives in to a positive. There is always something that can be done to help others in the community. Currently I’m working on @UCLAHealth ‘s dismissal of infection control needs of #cysticfibrosis needs. Saving lives reduces negative emotions! #patientchat
APFED.org @APFEDorg
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
Seth Rotberg @Srotberg15
💪🙌👍💯 We are here to help. Stay tuned for more! #patientchat
Carly Flumer @carlyflumer
@abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat
writer sam @writersamr
A2 I once read a book where I first came across the advice "thoughts aren't facts", which I try to remind myself. It's easy to get swept up in what ifs and forget that it's your brain getting carried away and not necessarily your reality. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hi all. I'm lurking today. My Friday is a little hectic at the office. #patientchat https://t.co/gbf3QHlNVW
Melissa VanHouten @melissarvh
Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have to act. I feel what I feel; that is reality. But I do not have to dwell on the hardships. I can focus on the blessings, and there are many. #PatientChat
Our Odyssey @_OurOdyssey_
Just trying to do our part in the health community to bridge the gap of unmet needs for young adults. #patientchat
Kim Emson @kimemson
@rheumpatient mindfulness seems so great yet so hard to achieve- how do you fair? #patientChat
Vera Rulon FAHIMA @vrulon
@MightyCasey Understand. The news is something I try to avoid on when emotional/sad. It's hard to avoid, unfortunately. #patientchat
Carly Flumer @carlyflumer
@writersamr If you remember the book, I’d love to know! #patientchat
Our Odyssey @_OurOdyssey_
RT @hi_speakbox: @patientchat T2: Negative emotions can pop up anywhere, not just in mental health. It would be pretty biased to suggest ou…
Virginia McIntyre @Virginia_McI
RT @patientchat: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t…
Alan Brewington @abrewi3010
RT @carlyflumer: @abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat
Richard Kreis @kreisr1
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Richard Kreis @kreisr1
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
Patient Empowerment @power4patients
RT @patientchat: Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat
Nigel H @Crohnoid
T1: Research is important and the internet is great for that but you need to remember that forums will be bised towards the negative as patients don't use them as often when all is going well #patientchat BTW - Sorry I'm late!
Mighty Casey Quinlan @MightyCasey
@vrulon Welp, for those of us who have spent a lifetime covering news, that's like saying "don't breathe" - and this issue impacts women's health in HUGE ways. So ... this ol' war horse keeps marching. #MeToo #patientchat #journo
Richard Kreis @kreisr1
RT @teaminspire: Hello to #patientchat, John Novack here on behalf of Inspire.
Melissa VanHouten @melissarvh
I also find it particularly helpful to advocate for others in the #Gastroparesis community/support groups. Gives my life meaning & purpose. Distracts me from my own worries & makes me feel as if I am contributing toward something worthwhile. #PatientChat
Inspire @teaminspire
RT @patientchat: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t…
Richard Kreis @kreisr1
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
Topic 3 (T3:) coming up… #patientchat
Patient Empowerment @power4patients
@radhachitale @patientchat Hi Radha! Glad you joined us #patientchat
Patient Chat @patientchat
@Virginia_McI @hi_speakbox Hi Virginia! Don't forget to include the hashtag #patientchat in all your tweets so everyone can see :)
Richard Kreis @kreisr1
RT @Ones_saro: July 12th Empowered #patientchat – Managing the Emotions of a Chronic Illness https://t.co/CfOhxNfgUo
Patient Empowerment @power4patients
RT @melissarvh: Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have t…
Patient Chat @patientchat
T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG
Virginia McIntyre @Virginia_McI
@patientchat @Peoplepain Oops for got #patientchat
Rheumatoid Patient @rheumpatient
@kimemson Been practising it daily for a few years now so getting better. My mind still wanders off though! #patientchat
Richard Kreis @kreisr1
RT @patientchat: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientc
Vera Rulon FAHIMA @vrulon
@MightyCasey Sure does. At least - finally - coming to light in a huge way. #patientchat
Inspire @teaminspire
RT @patientchat: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientc
Patient Empowerment @power4patients
@writersamr I love that. I'm writing it on a post it and sticking it to my mirror #patientchat
Richard Kreis @kreisr1
RT @melissarvh: Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have t…
Speakbox @hi_speakbox
@Virginia_McI @patientchat Unfortunately also true over here on the west coast. Wait-lists are brutal, delayed care is causing harm. Canada, we can do better! #patientchat
Alan Brewington @abrewi3010
A2 it’s important to allow negative emotions to run out of fuel on its on. Don’t fight negativity to return to positive, enjoy the negative until you come out of it. Be the best negative ever 😂#patientchat
Richard Kreis @kreisr1
RT @patientchat: What do you find helpful in coping with or reducing negative emotions? Let's discuss this Friday 7/12 at 1pmET during the…
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUT…
Nigel H @Crohnoid
A2 I find blogging, taking part in chats like this, or simply writing down my experiences, helps as you have to be objective and anaylse the situation. I find it helps get things in perspective. (But we are all different in our approaches) #patientchat
Mighty Casey Quinlan @MightyCasey
A3: I count myself lucky that I'm a tough old bird. When it comes to "additional help" I've only needed other cancer-community close buddies to share/commiserate with. And lots of Netflix. Nothing wrong w/escapism! 🤣 #patientchat
Vera Rulon FAHIMA @vrulon
T3: I'm lucky to have a wonderful partner who reminds me when I'm at that point that I cannot go at it alone #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
Great reminder 👇🏽
Patient Empowerment @power4patients
RT @patientchat: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientc
Carly Flumer @carlyflumer
@patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t think there’s a “right time” to get help. I don’t believe you can truly be on your own with a #chronic or #rare disease without some type of support. #patientchat
Speakbox @hi_speakbox
@patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the time to talk! With emotions, there isn't a right time, we all deserve the freedom to express feelings all the time. #patientchat ^Aidan
CancerDotNet @CancerDotNet
T2: Managing stress and emotions is an important part of your care. Begin by communicating how you’re feeling with your health care team, and educating yourself on ways to cope: https://t.co/BzU45qcWah #pallonc #patientchat
CancerDotNet @CancerDotNet
@patientchat T2: Managing stress and emotions is an important part of your care. Begin by communicating how you’re feeling with your health care team, and educating yourself on ways to cope: https://t.co/BzU45qcWah #pallonc #patientchat
Mighty Casey Quinlan @MightyCasey
@vrulon @jkbjournalist is a legit superhero. #journo #patientchat
Nick Dawson @nickdawson
@patientchat There’s the ole adage: when it interferes with your life #patientchat
Melissa VanHouten @melissarvh
Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep patterns to the point you feel it is significantly interfering w/your life, you should seek help (friends, pastor, counselor, support group). #PatientChat
Speakbox @hi_speakbox
@writersamr Well said, being able to filter through our thoughts and say, "not today negative brain." That's a superpower! (one we can all acquire) ^Aidan #patientchat
Vera Rulon FAHIMA @vrulon
@carlyflumer @patientchat Thank you for this insight. My condition is quite common. Can only imagine what people with #rare diseases go through. #patientchat
Ody_O @OdyO11
I'm late, sorry... I'm a patient from Europe with a rarely diagnosed disease. #patientchat
Patient Empowerment @power4patients
@patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, for your great insight @JBBC #patientchat https://t.co/hsB5W0kUR4
Melissa VanHouten @melissarvh
RT @hi_speakbox: @patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the ti…
Patient Empowerment @power4patients
RT @melissarvh: Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep…
Patient Empowerment @power4patients
RT @hi_speakbox: @patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the ti…
CancerDotNet @CancerDotNet
@patientchat T3: Emotional health can impact a person’s ability to make decisions about care. @StanfordCancer's Dr. @l_schapira offers compassionate advice for finding support, recognizing when you might need professional help during cancer treatment: https://t.co/TQxYzTGMRl #patientchat
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t thin…
Melissa VanHouten @melissarvh
RT @power4patients: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, fo…
Speakbox @hi_speakbox
@melissarvh Let them flow like water, well said. Let's not pathologize emotions, the spectrum of ways to feel is what makes us human and they're all completely normal. ^Aidan #patientchat
Spencer Health Solutions @spencerhealth
Sorry to be late! Great discussion so far in the #patientchat!
Mighty Casey Quinlan @MightyCasey
RT @power4patients: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, fo…
APFED.org @APFEDorg
Adding a licensed psychologist to your team of clinicians helping to manage chronic disease may be as important as your primary physician. Rare disease is overwhelming at times and specific learned coping skills are an important tool. #apfed #raredisease #cegir
Patient Empowerment @power4patients
@carlyflumer @patientchat 100% #patientchat
CancerDotNet @CancerDotNet
@patientchat T3: Emotional health can impact a person’s ability to make decisions about care. @StanfordCancer's Dr. @l_schapira offers compassionate advice for finding support, recognizing when you might need professional help during cancer treatment: https://t.co/TQxYzTpbZN #patientchat
CancerDotNet @CancerDotNet
T3: Dealing with stress, anxiety, uncertainty? Try being compassionate toward yourself @StanfordCancer’s Dr. @l_Schapira’s advice for coping with emotions during cancer treatment: https://t.co/fYD6ZCkzmN #patientchat
Melissa VanHouten @melissarvh
RT @hi_speakbox: @melissarvh Let them flow like water, well said. Let's not pathologize emotions, the spectrum of ways to feel is what make…
CancerDotNet @CancerDotNet
@patientchat T3: Dealing with stress, anxiety, uncertainty? Try being compassionate toward yourself @StanfordCancer’s Dr. @l_Schapira’s advice for coping with emotions during cancer treatment: https://t.co/fYD6ZCkzmN #patientchat
Richard Kreis @kreisr1
RT @btrfly12: Waving hello to #patientchat - can't stay, but if you are around the Twittersphere you should check it out. Today's topic is…
Richard Kreis @kreisr1
RT @carlyflumer: @patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t thin…
CancerDotNet @CancerDotNet
T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientchat
Amanda @LAlupusLady
A1 Depending on the age of diagnosis, a chronic illness can devastate a person. Find support from experts and other patients. Learn as much as you, be your own advocate. #patientchat
CancerDotNet @CancerDotNet
@patientchat T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientchat
Mighty Casey Quinlan @MightyCasey
@power4patients @patientchat @JBBC Yeah, I remember clearly, although it was over 10 years ago now, how hard the "now what?" hit me at the end of Cancer Year. #patientchat
writer sam @writersamr
A3 No idea, still working on that one! If I find I'm thinking too much I like to be distracted for a while. And part of my self care is if I'm reading cancery things online, to know when to stop, when it's useful and when it starts making me worry needlessly. #patientchat
Richard Kreis @kreisr1
RT @power4patients: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, fo…
Alan Brewington @abrewi3010
A3 when your quality of life lowers. #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up… #patientchat
Ody_O @OdyO11
@patientchat T1: For me, my diagnosis meant regaining control, not loosing it. Being severely symptomatic and undiagnosed was when I had no control. A diagnosis meant I could learn about it, seek doctors with expertise and management options. Being informed is important. #patientchat
CancerDotNet @CancerDotNet
T3: and how to #cope with distress during #cancertreatment: https://t.co/klDXnA4f0f #patientchat
Richard Kreis @kreisr1
RT @melissarvh: Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep…
Richard Kreis @kreisr1
RT @patientchat: Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat
CancerDotNet @CancerDotNet
@patientchat T3: and how to #cope with distress during #cancertreatment: https://t.co/klDXnA4f0f #patientchat
Speakbox @hi_speakbox
@_OurOdyssey_ A very hearty co-founder hello! Love what you're doing, community and connection are critical across all domains of health. ^Aidan #patientchat
Patient Chat @patientchat
T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/DmfmQ1GBPs
Spencer Health Solutions @spencerhealth
RT @CancerDotNet: T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientch
Melissa VanHouten @melissarvh
RT @OdyO11: @patientchat T1: For me, my diagnosis meant regaining control, not loosing it. Being severely symptomatic and undiagnosed was w…
CURE Magazine @cure_magazine
@patientchat One of our contributors, @Martha__Carlson, recently shared how she practices "Minute Mindfulness" to find the happiness of right now while living with metastatic breast cancer: https://t.co/D0YrTdN5lc #patientchat
Nigel H @Crohnoid
A3: So far self-management has worked with my #LTCs. I tend to be very analytical and that's my coping mechanism. Discussing situations with my wife is also a great help. Not sure how I will know when extra help needed #patientchat
Mighty Casey Quinlan @MightyCasey
THIS JUST IN FROM #PATIENTSINCLUDED DESK - just got word I have full stipend to Cochrane Colloquium in Chile in October! Which is a good thing, since I'M SPEAKING 😎 We return you to regularly scheduled programming. #patientchat
Rheumatoid Patient @rheumpatient
A3: If I'm feeling down, I'll try and do more things I enjoy. If down for more than 2 weeks I'll try and find a good friend to talk to. If that doesn't help, I'll self-refer for CBT (though it's a long waiting list!). #patientchat
CancerDotNet @CancerDotNet
T4: Even nurses and physicians, who have extensive knowledge of cancer and its treatments, report feeling anxious when they are the ones sitting in the patient’s chair. Having a friend or relative come with you can help: https://t.co/R6jPTa0z3i #patientchat
CancerDotNet @CancerDotNet
@patientchat Even nurses and physicians, who have extensive knowledge of cancer and its treatments, report feeling anxious when they are the ones sitting in the patient’s chair. Having a friend or relative come with you can help: https://t.co/R6jPTa0z3i #patientchat
Ody_O @OdyO11
@patientchat T2: For me, it's important to be able to be in touch with other patients. To understand what problems are systemic, what emotions we share - and to seek for solutions together. Especially for patients with rare diagnoses, the internet is important. #patientchat
Richard Kreis @kreisr1
RT @patientchat: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #pat
Max59 @clarabo33_mrs
RT @LAlupusLady: Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system…
Inspire @teaminspire
RT @patientchat: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #pat
Richard Kreis @kreisr1
RT @FibroFlutters: Empowered #patientchat - July 12th - Patient Empowerment Network https://t.co/zxezuKO5ZM via @nuzzel thanks @spencerheal
Our Odyssey @_OurOdyssey_
RT @LAlupusLady: A1 Depending on the age of diagnosis, a chronic illness can devastate a person. Find support from experts and other patie…
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@OdyO11 @patientchat There is so much truth to this! When those who feel dismissed and go undiagnosed for years are finally trusted and heard, it can be the most validating and empowering feeling. Thank you. #patientchat
Rheumatoid Patient @rheumpatient
A4: Rarely. I'm more likely to say something to the nurse as they usually ask more specifically about emotional wellbeing. #patientchat
Speakbox @hi_speakbox
You deserve a minute, fill it with mindfulness. ^Aidan #mentalhealth #mindfulness
Amanda @LAlupusLady
A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Resources including @MHFirstAidUSA and asking your PCP for a referral. #PatientChat
Carly Flumer @carlyflumer
@patientchat T4: I have a psychologist separate from my endocrinologist, as I suffered from #depression & #anxiety before #cancer, & it definitely came up. It really helped to have someone listen & help me process emotions. #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat A4: I have spoken with my doctor as stress and emotional reactions are directly related to my condition. Having a good relationship with your doctor is so very important. #patientchat
Spencer Health Solutions @spencerhealth
Having the ability to have a conversation with your MD as needed is important. How easy is it to get to your #HCP? #patientchat https://t.co/oMEcCI9oSv
Melissa VanHouten @melissarvh
Not much, as I have many other sources of support (family, friends, groups). I also tend to tolerate stress well & sometimes thrive on reasonable amounts of it, to be quite honest. It tends to motivate me. I am pretty sure I stress out my doctor sometimes, though. 😊 #PatientChat
Richard Kreis @kreisr1
RT @LAlupusLady: Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system…
Richard Kreis @kreisr1
RT @vrulon: #patientchat @vrulon here from NY. Looking forward to the chat!!
Richard Kreis @kreisr1
RT @MightyCasey: Greetings, all - loudmouthed #citizenscience #opendata firestarter here. Have a history as family caregiver/manager and #c
Richard Kreis @kreisr1
RT @carlyflumer: @patientchat Hi! I’m Carly, a #thyroidcancer survivor and future patient advocate! #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: T1: I'm not chronic (altho there is validity in POV that cancer is a chronic condition, it could return at any time) but m…
Richard Kreis @kreisr1
RT @patientchat: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t…
Richard Kreis @kreisr1
RT @carlyflumer: @abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A4: Absolutely! It was one of the first things I brought up once some of the dust settled. #patientchat
Our Odyssey @_OurOdyssey_
@hi_speakbox Hello to you as well Aiden! Always great to meet others in the community. -Seth #patientchat
writer sam @writersamr
T4 I was asked during diagnosis/before surgery if I wanted to be in touch with a Macmillan nurse for counselling but I wasn't bothered at the time. I was on auto pilot and not processing. The thinking and emotional impact comes after for me so that's why I haven't #patientchat
Kim Emson @kimemson
A4 i think animation can help with more things like this. its great at handling abstract sensitive subject matters #patientchat
Amanda @LAlupusLady
A3 when you are overwhelmed it is easy to feel isolated, but that is when you need to seek support and additional help. Do not hesitate to share how you are feeling. #PatientChat
Mighty Casey Quinlan @MightyCasey
T4: I got burned by my rads-onc (pun intended) calling me "disturbed" during treatment when I pushed back on communication issue(s) I had with her. And I'm a big believer in peer support in emotional health. So I stick to my program. #healthfuturism #patientchat
Janet M. Kennedy @GetSocialHealth
T4: Do you have to speak directly to your #HCP when you are having stress issues? Have you found messaging through your patient portal helpful or ineffective? #patientchat
Virginia McIntyre @Virginia_McI
@patientchat T4 no! I don’t think they would understand. #patientchat and feel it will lead to more prescribing.
Speakbox @hi_speakbox
@vrulon @patientchat Thumbs up to physicians that address our whole health - mind, and body. ^Aidan #patientchat 👍
Carly Flumer @carlyflumer
@vrulon @patientchat Yes! It’s so important to have a good relationship with your doctor, especially if you’re going to be seeing them for a long time, which usually is the case for #chronic disease patients. #patientchat
Richard Kreis @kreisr1
@patientchat A4: Trifecta Richard here, I spoke to my doctor about this a week after my wife pointed out I was different. The meds they were try out affected my personality and needed changing. Good thing we did. #patientchat
Rheumatoid Patient @rheumpatient
RT @vrulon: @patientchat A4: I have spoken with my doctor as stress and emotional reactions are directly related to my condition. Having a…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A3: A few months after brain surgeries I had a large panic attack (at home thankfully). Knew RIGHT then and there add’l support (meds) was immediately needed. #Patientchat
Inspire @teaminspire
@patientchat T4 Here's a column by @FMDGirl that speaks somewhat to the complexities of this topic of the patient/physician relationship https://t.co/ilPngaV9sI. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@GetSocialHealth I think it depends on the provider! I think patient portals can be a great tool for communication if you have a doctor who will use it! #patientchat
Vera Rulon FAHIMA @vrulon
Words of Wisdom #patientchat
Virginia McIntyre @Virginia_McI
@carlyflumer @patientchat Many would benefit if could see a Psychologist. #patientchat
Janet M. Kennedy @GetSocialHealth
RT @LAlupusLady: A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Re…
Richard Kreis @kreisr1
RT @GetSocialHealth: T4: Do you have to speak directly to your #HCP when you are having stress issues? Have you found messaging through you…
Richard Kreis @kreisr1
RT @melissarvh: I'm a control freak, & as such, loss of control has been 1 of most difficult things. In past, I've acted foolishly (like in…
Richard Kreis @kreisr1
RT @kimemson: A2 there must be other great communities like this one specific to you condition that would be a great support or does misery…
Nigel H @Crohnoid
A4: We've talked about stress briefly but never in any depth. I don't know whether emotional support is available should I require it. A question to ask next time I have an appointment #patientchat
DoubleTrojan @DoubleTrojan
@patientchat I tried speaking to a doctor at @UCLAHealth about the fear I feel because he doesn’t follow standard infection control guidelines when treating #cysticfibrosis patients. He was condescending and tried to kick me out of his practice. #patientchat
Quin Turner @QuinlanTurner
@patientchat A4. Sorry I’m late! Absolutely. I spent years looking for the right doctor for me and part of the criteria was someone who thinks beyond the tangible symptoms of my disease #patientchat
Patient Chat @patientchat
@MarkThomHudson Hi Mark! Don't forget to use the hashtag #patientchat in all your tweets so everyone can see :)
BMM on Health and Tech @datadrivencare
RT @LAlupusLady: Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system…
Carly Flumer @carlyflumer
@GetSocialHealth I have found it very helpful to have a patient portal! My doctor is very prompt which helps with anxiety. #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up… #patientchat
(っ◔◡◔)っ ♥ Mark Hudson ♥ @MarkThomHudson
@patientchat I control one small aspect of my life like shaving my beard or letting it grow. Having control of that one aspect helps me stayed centred in the rest #patientchat
Janet M. Kennedy @GetSocialHealth
Congratulations @MightyCasey! That's great news! #patientchat
Ody_O @OdyO11
@patientchat T4: The emotional impacts of my health condition are a lot less severe than the emotional impacts of encountering ableism and the quick assumptions that symptoms are psychogenic/caused by stress. I have a painful history re this, which means trust has been lost. #patientchat
Alan Brewington @abrewi3010
A4 I have. My mental health is broken too, need help. Plus, it’s part of my story which needs to be shared. #patientchat
Richard Kreis @kreisr1
RT @LAlupusLady: A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Re…
Patient Chat @patientchat
T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https://t.co/mklyzwF8XZ
Amanda @LAlupusLady
A4 Yes. As my Dr. said many people with chronic illnesses focus on the physical symptoms when the emotional issues can be just as devastating. #PatientChat
Ody_O @OdyO11
@patientchat T4: Since for me, it feels retraumatizing when HCPs start digging for stress and psychological factors, it is very important for me that it is my decision when to talk about such issues. I have doctors whom I trust with these topics, but it took time. #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat A5: Seriously? Reimbursement/pricing/costs cause anxiety and stress.... there's a lack of transparency and it is overly complicated. #patientchat
Carly Flumer @carlyflumer
@patientchat T5: I would say it had met my needs, especially with the introduction of patient portals, as well as online support groups. There’s a TON of info out there to go through, but if you connect with the right people, you become so much more knowledgeable. #patientchat
Speakbox @hi_speakbox
If you don't have time to join @patientchat directly, here's just a sprinkling of the wisdom being shared. Feeling down? Pick one thing you enjoy, do it. Not going away, follow up with someone for support. You don't need to hold it in. ^Aidan #patientchat #mentalhealth
Ody_O @OdyO11
@patientchat T5: It hasn't, by overfocusing on physical effects of emotional health and by missing differentiation. When a patient isn't able to seek help for psychological stress without physical symptoms being attributed to it, this inhibits access to care. #patientchat
Kim Emson @kimemson
A5 i feel many more healthcare organisations can be more visible so that they can be in the right place at the right time for patients using their comms, content and patient advocacy effectively #PatientChat
Inspire @teaminspire
RT @patientchat: T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https…
Carly Flumer @carlyflumer
@patientchat T5: Becoming more knowledgeable can also improve health outcomes, so #healthliteracy is extremely important. However, not enough orgs. in healthcare recognize this need. #patientchat
Janet M. Kennedy @GetSocialHealth
I consider myself "healthy" so I truly can't comprehend how those of you with a #chronicillness manage the 24/7/365 aspect of your health challenges. #Courage #Amazing #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
So many patients continue to feel dismissed by their providers, especially those from marginalized groups, including women. This causes more emotional stress for many. Solution? Empower patients and educate providers! #patientchat
DoubleTrojan @DoubleTrojan
@patientchat T5: having a doctor such as the one I saw at @UCLAHealth treat me with such disrespect and vitriol when I asked him to follow @CF_Foundation @CDCgov infection control guidelines was devastating. Cross infection can kill people with #cysticfibrosis #patientchat
Alan Brewington @abrewi3010
A5 I’m still upright and kicking which means my story is being heard. The trouble is we measure success by yesterday’s bar, needs to be based on today’s needs. #patientchat
Melissa VanHouten @melissarvh
I'll answer based on what I see in my groups. Support 4 mental/emotional health is sadly lacking in world of chronic illness. My people struggle, suffer, & few seem 2 understand. Hard 2 get referrals 2 qualified counselors & that's why they often turn 2 support grps. #PatientChat
Carly Flumer @carlyflumer
@vrulon @patientchat Yes! Billing is the worst! I have a love/hate relationship with health insurance. #patientchat
Amanda @LAlupusLady
A5 There has not been enough support for people living with chronic health issues to have the specific care and treatment for their mental health issues. My Drs. know about my emotional needs and there are so few resources other than patient-led support groups. #patientchat
Toni Navarro - Digital Marketing @ToniNavarroYes
RT @kimemson: A5 i feel many more healthcare organisations can be more visible so that they can be in the right place at the right time for…
Annette McKinnon @anetto
T2 Detailed knowledge of the facts about my health situation and the best course to follow for a successful outcome are important, as is having a doctor who is “on my team” ie one who acknowledges that my active involvement is important. #patientchat
Ody_O @OdyO11
@patientchat T3: When I am aware that I won't be heard, I seek help. That's the most negative feeling, and that's the one I can't work myself out of (since my self-efficacy is impaired when I won't be heard). #patientchat
Spencer Health Solutions @spencerhealth
When dealing with a #chronicillness a network of health peers who understand what you're feeling must be essential. Have you all found an online #patient support group? #patientchat
Vera Rulon FAHIMA @vrulon
@LAlupusLady I wish there were better solutions for this. Feel for you. #patientchat
Ody_O @OdyO11
RT @cvhconsulting: @OdyO11 @patientchat There is so much truth to this! When those who feel dismissed and go undiagnosed for years are fina…
Melissa VanHouten @melissarvh
My people feel judged. Feel like no one understands or takes their emotional struggle seriously. We need to do a far better job of offering resources at all points of care & upon diagnosis. #PatientChat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@vrulon @patientchat Absolutely. Understanding the health system and how to navigate it can feel like a full time job, and it's exhausting. #patientchat
Rheumatoid Patient @rheumpatient
A5: Don't really get much emotional support from the NHS in the UK. I get more from fellow patients on Twitter! #inthistogether #patientchat
Annette McKinnon @anetto
T5 The current healthcare system is not focussed enough on team-based healthcare. With a chronic disease we often need more than one provider to help us live life as fully as possible. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Ody_O @OdyO11
RT @anetto: T2 Detailed knowledge of the facts about my health situation and the best course to follow for a successful outcome are importa…
Speakbox @hi_speakbox
@carlyflumer @vrulon @patientchat With everything a person needs to manage during a health challenge, billing should not be the thing stressing them out. We're going to get our best minds on this, there must be a better way! ^Aidan #patientchat PS: may have more questions.
Quin Turner @QuinlanTurner
@patientchat A5. it’s in transition. My doctor’s office staffs a psychiatrist due to their patient’s needs. I don’t think many utilize them yet but just knowing the option’s there helps. Outside of the system, patient groups are helpful as the empathy makes such a difference #patientchat
Vera Rulon FAHIMA @vrulon
@cvhconsulting @patientchat And right when a person needs to focus on themselves and their health. #patientchat
Caroline - Eos Advocacy @robyndarcey5
RT @patientchat: T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https…
Carly Flumer @carlyflumer
@anetto #coordinatedcare is incredibly important! #EHRs DO NOT talk to one another! #patientchat
Nigel H @Crohnoid
@cvhconsulting @vrulon @patientchat I wrote down some of the things I find help to manage one's route through the health system (NHS - so no mention of insurance etc.) - https://t.co/xFG4dqRSxr #patientchat
Vera Rulon FAHIMA @vrulon
@hi_speakbox @carlyflumer @patientchat Yes! Key to address. #patientchat
Inspire @teaminspire
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Toni Navarro - Digital Marketing @ToniNavarroYes
@kimemson I agree with @kimemson in fact, more than 87% of 14-22 years-old have gone online for health information, and most of then have used #socialmedia #healthapp or watch #content and #video online to find out more. #PatientChat #healthcare https://t.co/o5XKuyqo0N
Ody_O @OdyO11
RT @melissarvh: My people feel judged. Feel like no one understands or takes their emotional struggle seriously. We need to do a far better…
Carly Flumer @carlyflumer
@patientchat CT: #Healthliteracy and emotional support are lacking in the #rare and #chronic disease space. Advocates & #patients LIKE US recognize this & can make a difference by discussing how we feel with our care team & educating ourselves properly. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@DoubleTrojan @patientchat @UCLAHealth @CF_Foundation @CDCgov Good for you for standing your ground! It's not easy, but these are the actions that lead to change. When we demand better care, it will shift our experiences. I hope you got the care you deserve. #patientchat
Annette McKinnon @anetto
@spencerhealth I’m still a part of a very long-standing group called RA-Factor on https://t.co/rTVt4C2Jtk. It was an original Yahoo group. #rheum #patientchat
Alan Brewington @abrewi3010
Personally I hate the phrase “change is scary” . Life is change. What’s scary is work load change brings. Working hard is how we climb Everest, ski, graduate, love, friendship. Chronic is work. #patientchat
Cheryl @HealSuffering
A1: After my diagnosis I fell into a spiral of depression. I had to relearn what being productive meant by changing my own expectations of what I could do with my disabilities. The first step was to acknowledge that I am still capable, just in a different way. #patientchat
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat CT: #Healthliteracy and emotional support are lacking in the #rare and #chronic disease space. Advocates & #p
Spencer Health Solutions @spencerhealth
And that team includes the #patient! #Patientchat https://t.co/Tj6gR9MwkE
Mighty Casey Quinlan @MightyCasey
RT @DoubleTrojan: @patientchat T5: having a doctor such as the one I saw at @UCLAHealth treat me with such disrespect and vitriol when I as…
DoubleTrojan @DoubleTrojan
@cvhconsulting @patientchat @UCLAHealth @CF_Foundation @CDCgov Thank you. 🙏 I’m still battling @UCLAHealth to treat vulnerable #cysticfibrosis patients with the proper care we deserve. They haven’t been as open as I would have hoped. But I will stop at nothing so my community has access to safe care. #patientchat
Amanda @LAlupusLady
CT Learned that despite our various chronic health conditions many patients feel that their emotional and mental health are just as important as the treatment of our physical health. #PatientChat
Rheumatoid Patient @rheumpatient
RT @HealSuffering: A1: After my diagnosis I fell into a spiral of depression. I had to relearn what being productive meant by changing my o…
Patient Empowerment @power4patients
RT @HealSuffering: A1: After my diagnosis I fell into a spiral of depression. I had to relearn what being productive meant by changing my o…
Ody_O @OdyO11
RT @anetto: T5 The current healthcare system is not focussed enough on team-based healthcare. With a chronic disease we often need more tha…
CancerDotNet @CancerDotNet
CT: Communicating how you're feeling and coping with your health care team is important. They can help you manage and cope with emotions, find support, or point you in the direction of someone who can. #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great! Reach out to @power4patients or @patientchat anytime.
Annette McKinnon @anetto
T5 The healthcare system does not focus on emotional issues with chronic disease. In fact when you have a primary care Doctor who wants to deal with one problem per visit, your chronic disease is barely acknowledged or addressed. #patientchat
Speakbox @hi_speakbox
@patientchat CT: #patientchat thank you 🥰you've filled me with hope. Leaving encouraged that we can make healthcare better if we do it together with patients, providers, everyone. I've definitely got that #FridayFeeling ^Aidan https://t.co/6V1w1zlafP
jen @ladyJENbugz
RT @CancerDotNet: CT: Communicating how you're feeling and coping with your health care team is important. They can help you manage and cop…
Kim Emson @kimemson
CT so many amazing patient advocates out there! #PatientChat you are all having a social impact so keep it up! see ya next time! 🙌
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour.
Janet M. Kennedy @GetSocialHealth
RT @ToniNavarroYes: @kimemson I agree with @kimemson in fact, more than 87% of 14-22 years-old have gone online for health information, and…
Carly Flumer @carlyflumer
@anetto Yes, there’s never enough time! #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@Crohnoid @vrulon @patientchat This is great, Nigel! I developed a face-to-face training that covers some of the things you've mentioned. The goal is to provide folks with the skills and practice they need to self-advocate for themselves. https://t.co/tJetbMFYzL #patientchat
Patient Chat @patientchat
We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw Hope to see you there!
(っ◔◡◔)っ ♥ Mark Hudson ♥ @MarkThomHudson
@patientchat Support is key to all aspects here I think and actually I am firm believer in twitter as a resource, I’ve met people like @MarcLittlemore @Resus2Runner @aroradrn @iceman_ex among others who are extremely helpful and nice for support or advice #patientchat
Swallow, My Sunshine @growthesunshine
This is definitely true -- and that emotional attention should be on patients and, when applicable, their caregivers too!
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@DoubleTrojan @patientchat @UCLAHealth @CF_Foundation @CDCgov That's incredible! You are an inspiration for others. #patientchat
Nigel H @Crohnoid
CT: I sum up my attitude to #LTCs by "Realism without Pessimism" ie. I like to keep well informed about the facts relating to the conditions but do not dwell on the negative possibilities (#educatedostrich approach) #patientchat
Vera Rulon FAHIMA @vrulon
#patientchat @patientchat thank you for a great chat today. Empowering and helpful! Have a great rest of your day everyone!!
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw…
Janet M. Kennedy @GetSocialHealth
Yikes! Yahoo groups! I'm in some but haven't tried to visit them in YEARS! #patientchat
z 🦜 @zebrafinch
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
z 🦜 @zebrafinch
RT @patientchat: We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw…
z 🦜 @zebrafinch
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
z 🦜 @zebrafinch
RT @patientchat: T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https…
z 🦜 @zebrafinch
RT @patientchat: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #pat
z 🦜 @zebrafinch
RT @patientchat: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientc
(っ◔◡◔)っ ♥ Mark Hudson ♥ @MarkThomHudson
@patientchat Yes but only when the wheels fell off and I was in a very bad way. We often turtle in and might need external support to say you need help #patientchat
z 🦜 @zebrafinch
RT @patientchat: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t…
z 🦜 @zebrafinch
RT @patientchat: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take con…
Mighty Casey Quinlan @MightyCasey
CT: there's massive power in peer community and peer support. Key is to make sure you're getting evidence based info rooted in science on the dx/tx front, and the emotional support you need from that peer/group. #healthfuturism #patientchat
Annette McKinnon @anetto
CT When the health system does not fill patient and caregiver needs we need to organize ourselves and provide one another with peer to peer help and support. #patientchat
Nitin Arora @aroradrn
RT @MarkThomHudson: @patientchat Support is key to all aspects here I think and actually I am firm believer in twitter as a resource, I’ve…
FibroFlutters @FibroFlutters
@patientchat T4 Thinking back I even completed an #anxietymanagement program that was very useful. However, the problem with it, though, was that I was already doing most of it. 🙄 It was good to go over it properly though to make sure I was doing things right. #patientchat
Mighty Casey Quinlan @MightyCasey
And the shameless promotion department here at @power4patients (I'm on the advisory board 🤣) says watch for my next blog post, which talks about exactly ⬆︎⬆︎ that! #patientchat
FibroFlutters @FibroFlutters
Sorry I wasn't fully in attendance but I'm not in atm I'm having some 'me' time with #friends #patientchat
FibroFlutters @FibroFlutters
#patientchat
Cheryl @HealSuffering
A2 Take 3 index cards & write 10 activities that you do well, then put them in places that you see often in your home or office Each time you see it read the list out loud Take a breath then continue with your day RESOURCE: #mindfulness https://t.co/3USlJr2mSW #patientchat
Rosé @rose_red_121
RT @abrewi3010: Personally I hate the phrase “change is scary” . Life is change. What’s scary is work load change brings. Working hard is h…
Rheumatoid Patient @rheumpatient
RT @patientchat: We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw…
Rheumatoid Patient @rheumpatient
RT @anetto: T5 The healthcare system does not focus on emotional issues with chronic disease. In fact when you have a primary care Doctor w…
Cheryl @HealSuffering
A3 Negative thoughts lead to negative feelings which can lead to #depression & #anxiety Learn the symptoms, speak to your doctor & realize that healing is a whole body process #patientchat
Christine Morgan @Chris5anne
RT @rheumpatient: A5: Don't really get much emotional support from the NHS in the UK. I get more from fellow patients on Twitter! #inthisto
Cheryl @HealSuffering
A4 Since my injury in 2007, it had been a slow fade to #depression #anxiety #agoraphobia & #PTSD My Dr recognized it. I have been seeing a therapist & Psychologist ever since. There is no shame in seeking help #Breakthestigma #patientchat
Ody_O @OdyO11
CT: For me, emotional support for people living with an impairing chronic health condition would mean to understand ableism and the many contexts in which agency and autonomy is impaired (esp. in healthcare). #PatientChat
#patientchat content from Twitter.